Things that make you go hmmmm......

My mom called yesterday to let me know Riley's sugar was high.

She knew I would tell her to recheck it, so she already had. I always recheck when the result is in the 300s and there's no real explanation. For example, he had pasta or he's been running high all day.

But, the last few days his sugars have been great and the 343 that registered just didn't make sense. So, she checked it again and got 302. Yes, different, but still high.

He had a chicken sandwich and apple sauce for lunch (a very common meal for him) So, it was one of those "What the heck?" moments.

I told my mom to bolus for the 302 and to recheck in one hour. Whenever I bolus for a abnormally high sugar, I recheck in an hour to make sure it's coming down. That way I know it's probably not his set causing the high.

My mom called me an hour later. Riley's sugar was 50. Yes, 50 and he still had an awful lot of insulin on board.

He got fruit snacks and some (uncovered) cookies. Somehow he miraculously never rebounded.

So, my question is this: What in the heck happened? It's just so frustrating.

His sugar was checked twice, fingers wiped both times, using different fingers on a different hand. So, the high reading should have been correct. And, the low reading was correct.

He hadn't been any more active than usual. So how in the world did he drop 252 points in one freaking hour? Don't have an answer? Me either.

Just another example of why you can never just get comfortable with this disease.

Brought to you by the number 35

Friday night I packed. Clothes, check. Toiletries, check. Insulin, check. Infusion sets, check. Extra strips, check.

Saturday morning we headed off to the great city of Charlotte.

Before checking into the hotel, we stopped to eat. While at the restaurant, Riley proclaimed that his sugar felt low and then he began to slide down in his seat almost to the floor.

His sugar was 61 . He got fruit snacks and then lay in the booth with his head in my lap and his feet in Michael’s until he felt better.

This was one of the doosies though. His sugar did eventually come up. But, it was one of those where he felt so bad he was whiny and begging for more fruit snacks.

But, other than that little episode (and the resulting spike of 310: rebound or miscounted carbs for the mini pizza he ate, who knows?), things on the diabetes front did just fine on our little trip.

Then, it was off to the hotel where I took a much-needed nap while Riley and Holden had pillow fights and Michael watched ESPN.

Then, it was time to leave. I was so excited my stomach felt like it had butterflies fluttering around in it.

We walked out of the front door of the hotel lobby, turned left, and then left again. And, there it was: Charlotte’s Bobcat Arena.

Now, I was really getting excited. Was he already inside? What was he doing? Would he play much? Would I be able to see him check his sugar?

We got there plenty early and sat down in our seats. We took the time to pose for some photos.

I took in the layout of the place.

Then, it was time. The lights dimmed and the music started and…there he was!! It was Adam Morrison!!!

I was clapping and screaming (and so was Riley).

We had a great time. Morrison didn’t start, but he got in the game fairly early and played most of the game. He ended up scoring 13 points.

We had great seats (8 rows up from the court), but it was behind the visitors bench. I couldn’t really see him when he was on the bench, so I never saw him check his sugar. (but I’m sure he did.)

The Bobcats played the Toronto Raptors and were only losing by 1 at half time, but Okafor and Wallace were both hurt in the second half and the Raptors ended up winning by 16 points.

But, I don’t care. I got to see Adam Morrison. I got to see someone who got diabetes and said, “So what? I can still do what I want.” And then proceeded to do just that. He was diagnosed with diabetes in the 8th grade, but never gave up his dream of being in the NBA.

Most people just saw an NBA basketball star run out on the court. But, not me. I saw hope. Hope for Riley and his future. Hope that Riley really can one day do whatever he wants.

I screwed up

I screwed up.

I’m not surprised. It’s not the first time I’ve screwed up, and unfortunately, it won’t be the last.

But, I screwed up when it comes to Riley's diabetes and it is tearing at my heart this morning.

I know it’s not really that big of a deal. I’m trying not to dwell on it. The whole reason I’m writing this post is to get it out and hopefully move on. It really amazes me how writing about an experience helps me to move on and not dwell on it.

Last night at supper Riley’s sugar was 116. Excellent.

He had some meat, spaghetti Os, french fries, and some ketchup. I counted his carbs twice and bolused for 25 grams.

At 9:30 last night, he wanted a snack. I checked his sugar. It was 351.

I looked at Michael, “Hmm, I wonder how that happened.”

I checked his needle, checked his tube for bubbles, and found everything to be in working order. I just chalked it up as "one of those things".

I bolused. He went down. He had a snack. He went to bed. He went low (69) twice during the night.

This morning at my mom’s I was logging his sugars and what he ate last night.

I started writing down, “french fries, ketchup, spaghetti o’s” . Then I started thinking. “Wasn’t there something else?”

Then it hit me. He had a roll. He ate a roll and got no coverage for it, 15g of no coverage.

Well, that explains the 351.

His average sugar yesterday was 164. Not bad for a four year old. But, I averaged his sugar without the 351 and it was 145. I like that better.

So, now, I’m beating myself up for miscounting his carbs. I know things like this happen. I know it won’t be the last time I do it. And I know in the grand scheme of life it didn't make that much of a difference.

But, I’m supposed to protect him. And, I’m the one who ran his sugar up last night. It was me. Not his insulin or a kink in his cannula or some weird unexplained cosmic thing. Me, me, me.

It just scares me. Number one, that I could just forget to bolus for something. Number two, it scares me what not bolusing for one roll did to his sugar.

Seeing what the miscount in carbs did made it more real to me somehow. It’s strange. I can’t really explain it.

It just sort of reinforced to me how dangerous this disease really is. And, how important it is to stay on top of it 24/7.

Maybe I needed to be reminded of that.

Parenting a child with diabetes

I’ve been thinking a lot lately about the parents out there who have just learned that their child has diabetes.

What would I say if a mother approached me and said, “My child was just diagnosed with diabetes yesterday.”?

Is there really anything that can be said? There are really no words of comfort to give. There is nothing to say to make it better. But, I’d try.

If nothing else, I’d be there to hold their hands and answer their questions. Even though, unfortunately, a lot of the questions they might ask really have no answers.

I know I’d try to convey to them that things will get better, but they probably wouldn’t believe me.

I remember when Riley was first diagnosed, I kept hearing, “It will get easier.”

And, I kept thinking, “No it won’t. It might have gotten easier for you, but it won’t for me. My son has a chronic disease and that is not going to change.”

But, somehow, even though the chronic disease part isn’t going anywhere, things did get easier, at least a little.

I think maybe the worst part for most parents is worrying that they’re not doing everything right. (which is impossible by the way)

I mean, we spent one night in the hospital and then I’m supposed to come home and be a pancreas for my 3-year-old son. I was armed with the knowledge of drawing up and injecting insulin and a vague understanding of counting carbs, but that was pretty much it. And, there is so much more to it than that.

The hard part is realizing that you’ve got to learn as you go. Of course your endo is there to guide you a bit. But, they can only do so much.

If there’s one thing I’ve learned, it’s that taking care of diabetes is a lot of guesswork. Now, once you get the hang of it, it’s an educated guess, but it’s still a guess nonetheless.

You’ve got to get to where you’re OK with that. There is no x + y = good blood sugar.

That was really hard for me. I thought you give him the insulin to cover the carbs and his sugar will always be in range.

I quickly learned that his sugar is often not in range no matter how hard I try.

When Riley was first diagnosed, I would sit for hours and look at his log book trying to figure out what I did wrong, why his sugar went up to 350 and then down to 57.

I’ve learned that usually it’s not anything I did wrong or anything that Riley did, it just is what it is. That’s a hard pill to swallow.

As parents we are supposed to protect our kids. We are supposed to fix things and with disease there’s no “fixing it”. Try as hard as I might I can’t fix it. I can’t make all of his sugars be in range.

Now, does that mean I should just give up? Heck no. It just means I have to be resilient. No matter how I tired I am of trying and not getting the results I want, I have to keep trying. I don't have a choice.

So, for any parents out there who might be reading and your child is newly diagnosed I wanted to leave you a few tidbits that have helped me.

#1) Keep good records. Even if you’re tired at the end of the day, log those sugars. They are your key to recognizing patterns. And recognizing patterns lets you know where you might need to make adjustments in insulin. And, by pattern, I mean at least 3 days worth of similar sugars at similar times.

#2) Don’t obsess over a few high sugars. (Yeah, I know, it seems impossible.) I used to freak out ANYTIME Riley’s sugar got high. I’ve kept all of his records and one time I went back and looked at his sugars from his first few days home. There were a few high ones, but they were way better sugars than what I would see down the road. But, I remember panicking a lot back then if his sugar went over 250. Now, at the end of the day, I go through and average his sugars. It’s really helped a lot to put it all into perspective. All of the sugars are not going to be OK, but I know at the end of the day if his average blood sugar is OK, then we’re on the right track. This is also another good way to notice patterns. If he has a few high days in a row, I know some adjustments might be needed. ( This only takes a few minutes. I usually do it while I'm watching TV.)

#3) Don’t forget to let your kid be a kid. (That probably should have been #1 on the list) I try very hard to let Riley be like everyone else as much as I can. I let him have cake and ice cream at birthday parties. He has a cookie or two for dessert every night. He got a sucker after getting his hair cut yesterday. When he was first diagnosed I would freak out about birthday parties. I would go in the bathroom and cry when he ate his cake. But, I’ve since figured out how to dose for birthday cake and for ice cream. The only way to learn how to deal with things, like cake and ice cream, is to let them have it and learn what it does to their sugars and then figure out how to fix it. There is not really much that your child can't do. Really.

#4) Test their sugar and test it often (kind of quoting Wilfred Brimley there) Don’t ever let someone tell you you’re testing your child’s sugar too much. You are the parent; you’re paying for the strips, test as much as you need to. I tested more than Riley really needed to be tested in the beginning. It was more for me than for him. It helped calm my fears. But, since then the testing has decreased. But, I still test anywhere from 9-12 times a day (on average). If he has a string of lows I test more, of course. You will know how often you need to be testing. And, to go along with that, don't let anyone tell you you're getting up to test too much at night. Again, you do what you've got to do.

#5) Never stop being an advocate for your child. (That kind of goes with what I said in #4. Don’t let their endo brush you off when you feel like you need to talk to them. (If they keep doing this, find a new endo. Riley's endo lives 3 hours away. But, I trully believe she's the best there is and it's well worth the drive.)Don’t let others make comments about your child having "bad diabetes” without correcting them (nicely, of course). We are their voice. We’re all they have until they can do it on their own. Educate, educate, educate. That is the key to getting people to help find a cure.

OK, I didn’t mean to ramble. Nor did I mean to sound like the authority on parenting a child with D. I am far, far from it. Most days I feel like I'm flying by the seat of my pants myself.

I'm just sharing a little bit of the knowledge I've picked up. I'd love to hear some of yours.

FULL REWIND REQUIRED

Riley had been running high for a while. He would come down a little with insulin, but not as much as I thought he should. He woke up with a sugar of 222 this morning. That’s pretty unheard of for him. But, he had lasagna for supper last night, so I chalked it up to that.

I arrived in the office at 12:30 and picked up the phone to call my mom. Her first words were, “He’s still high.” I told her I’d be there soon to change his site. I’d rather be safe than sorry.

I got to my mom’s, sat down on the couch, and called over Riley. I pulled out his old set. I couldn’t find anything wrong with it. It looked fine to me.

I filled the cartridge with insulin and tapped out all the bubbles. Then, I went to prime/rewind on his pump menu and hit “OK”.

I scrolled up to “rewind”. It flashed across the screen “FULL REWIND REQUIRED”. Every so often, his pump requires that it rewind the whole way. His pump will hold 200 units. Riley only uses 9.5-10 units a day, so there’s no need to fill it all the way. I usually only rewind to about 75. It doesn’t take as long that way.

As I sat there listening to the whir of his pump and watching the arrows flash on the screen, I thought, “Hmm, why didn't God give us a rewind button?"

What if I could rewind back to before Riley had D, back to when life was simple?

I really don’t remember what life was like before Riley got diabetes. I don’t remember not thinking about what he ate or when he ate, or even if he ate. I don’t remember not getting up two or three times a night to check on him. I don’t remember going to work and not calling my mom all day to check on him.

It’s a defense mechanism I guess. It helps to take some of the sting out of it.

The whirring stopped and I heard a beep and my attention was again returned to the pump. I primed it and swabbed the area with IV Prep.

I cocked the inset and held it up against Riley’s skin. He flinched as the spring released and delved the needle into his flesh. I held it there a few seconds and pressed down a little. Then I pulled back on the device. And, out came the needle and the canula with it. “Darn it!!!”, I shouted. It didn’t stick.

I got a tissue and held it to where the blood was trickling out. It seemed to take forever to stop bleeding.

Then, I went through the routine again with a new set. Placed it against the skin, deep breath, released the spring, and, this time it stuck.

I bolused for his lunch he had just eaten and cleaned up what was left from the site change. Then, I leaned over and gave Riley a kiss on the cheek and explained that I had to go back to work.

He looked at me and said, “Now I’m going to go low.”

“What did you say?”

“I’m going to go low.”

“Why do you say that?”

“Because sometimes when you change my needle, I go too low.”

He’s right. It’s just something that happens. A 60% decrease in his basal for 3 ½ hours and a decrease in his meal bolus usually does the trick. But, he still usually has at least one time during that day that he has to have fruit snacks to keep him from going too low.

As smart as he is and as proud as I am that he knows this, I turn away as the tears well up in my eyes.

“It’s just so unfair!”, I think to myself. “He shouldn’t know that! He shouldn’t have to worry about things like that!”

But, he does.

And, now, I know why God doesn't give us rewind buttons.

I don't know how Riley got this disease or why. If I were to go back in time, it wouldn't prevent him from getting it, it would just delay it.

To fully get rid of this disease a full rewind would be required.

And, I'd rather have the Riley with the carbs and the pump and the midnight needle sticks than to have no Riley at all.

A part of me

I have been inspired by Kerri and Nicole, whose significant others are so sweet they’ll give you a cavity, to write a post about my sweetie.

I know I don’t tell him nearly enough how much he means to me. I take so many things for granted.

Like, the fact that if I happen to groan when I roll over in bed, he always asks me if I need anything. And, if I do need (or want) anything, he’ll get up and get it, whether it’s when we first go to bed or at 3 o’clock in the morning.

Or, the other night, I accidentally got his pillow by mistake. As I lay my head down on it, I commented on how nice and soft it is. He immediately responded with, “You can use it if you want to.” He said this knowing that my pillow is as flat as a pancake and he probably wouldn’t sleep a wink if he used it, because he loves fluffy pillows. But, he would have given it up to make me happy.

Or, the poems he’s written me over the years. Or, the flowers he brought home a couple of nights ago, just because. Or, the wonderful father he is to both the boys. Or, the way he looks at me sometimes like he did when we first met. Or, how whenever someone asks him to go out after work, he tells them he’d rather go spend time with his family. Or the way he makes me feel like I’m the most attractive person in the world even though I still have my pajamas on and my hair is sticking up all over the place.

He makes me feel safe. He makes me feel needed. He makes me feel wanted.

He helps make me, me.

I love you, Michael Alexander, like a whole lot.

Fun with music

A little while ago a lot of you posted this meme. I wasn't in a very fun mood at the time, so I skipped it.

I decided to do it today, just for fun.

The rules are: put your Ipod, MP3 player, or computer music program on shuffle and answer the questions with whatever song pops up.

What does next year have in store for me? Lips of an Angel--Hinder (huh?)

What's my love life like? 18 and Life--Skid Row ("Your crime is time and it's 18 and life to go" Well, I was hoping to be with Michael for the rest of my life.)

What do I say when life gets hard? Drain You--Nirvana (Yes, it is very draining sometimes.)

What do I think of on waking up? Kiss--Prince (Funny, Michael usually wakes me up with a kiss every morning.)

What song will I dance to at my wedding? Mama Kin--Aerosmith

What do I want as a career? Money Maker--Ludacris (Now we're talking!)

Favorite place? Zero--The Smashing Pumpkins

What do I think of my parents? At Last--Etta James (That would have worked out better if I could switch that with my wedding song answer.)

What's my porn star name? Straight To Hell--Drivin' N' Cryin' (Is that a sign or what?)

Where would I go on a first date? Wishing Well--Terence Trent D'Arby (And, I know just what I'd wish for.)

Drug of choice? Swim--Bush

Describe myself. Testosterone--Bush (Well, I didn't really think I was all that manly looking.)

What is the thing I like doing most? What I Got--Sublime (The perfect answer!!)

What is my state of mind like at the moment? Billie Jean--Michael Jackson

How will I die? Waiting on the World to Change--John Mayer ( I hope not.)

Well, that was fun. Feel free to play along if you'd like.

One more thing

One more thing about the badge in my sidebar. You can also put it on your blog or web page or wherever you'd like. Just go to the sidebar and click on "Get this badge".

Thanks!

Six degrees of seperation

I got an email about this, but I didn't really pay much attention to it until today.

The email was explaining a way to have people donate to the charity of your choice. (This was started by Kevin Bacon, thus the name.) So, I got to thinking, why not give it a shot? Even if I don't get any donations, I won't be any worse off than I am now.

The charity I chose is The Iacocca Foundation. If you would like to donate, please click the link on the blog.

The people that raise the most money will get $10,000 donated to their charity. $10,000 to go to research to find a cure for diabetes, wow that would be great.

If you would like to fund your own charity you can do so by going to Network for Good.

Test strip update

Since I last posted, I have gotten the strip problem straight, for now.

Not long after I wrote my last post, I found a medical equipment company to get the strips from. The man there was very knowledgeable and very helpful.

I went and picked up 250 Freestyle strips this afternoon. From now on they will be mailing me 350 strips every month.

And, I no longer have to pay up front. They called my insurance company and found out I'd met my deductible. (Yeah, like the very first day that the plan started.) And, they are just going to send me a bill for my 10%. That means I got 250 strips today for $20.00. Woo hoo!!!

But, you know what the best thing is that happened today? I found out what a great community the OC is. I had a couple of people to email me and offer to send some strips to get me through. I can't tell you how much that means to me.

I am honored to be a part of such a wonderful group of people.

I'm still really, really tired, but now it's a happy tired.

P.S. George, I'm really hoping you win the lottery.

Tired

I’m tired, just plain tired.

I really, really, really need a good night’s sleep. Michael and I have been getting up 2-3 times a night to check sugars for the last 16 months. And, there’s no end in site. You see, if I don’t have the alarm set to get up and check sugars, then I won’t sleep anyway because I’ll lie there and wonder what his sugar is all night.

I’m so tired I’ve slept through the alarm a few times. Evidently, I’ve been hitting snooze over and over again in my sleep, because eventually the alarm will wake me and it will be 30 minutes or so later than when I meant to get up and check.

But, it’s a necessary evil. We still have occasional nighttime lows. And, here lately, nighttime highs. Two nights ago we kept getting up and bolusing sugars in the 300s. Finally, at 5 AM I decided I’d had enough. As much as I hated to, I changed his set. (I found out he had a bent cannula)

Riley awoke to the stick of the needle and started to cry. When will it ever end?

Also, I’m mentally tired. Not from the numbers, but the other aspects of this disease.

I am still fighting a battle with my insurance company, a battle that has been going on for almost 5 months now.

I’m still having trouble getting Riley’s strips. I am able to get his 150 a month just fine. They are billed under pharmacy. But, the others I need every month, that’s another story. The rest of strips are billed as DME (Durable Medical Equipment). Don’t ask me why. It makes no sense.

The ones I get under DME I have to pay for up front (around $250), then the insurance is supposed to send a check to reimburse me for what is covered (90%). But, I have yet to get reimbursed for any strips that I have purchased since October 1st. And that, my friends, is a whole lot of freaking money.

I have been given several reasons why I haven’t received the money yet. The last reason is that the strips were purchased out of network, so now I may not get any of the money back.

I have someone working on getting me my money. But, in the meantime, I had to find a pharmacy that is in my network.

I went to this pharmacy yesterday (after calling Dr. M and getting all the paperwork faxed that I would need to get these strips), and was told that the insurance was denying the strips saying I needed prior authorization. This is how all my trouble started in October.

I tried to explain to the pharmacist that I did not need prior authorization and that he needed to bill it as DME. He just looked at me with this dumb look on his face. He called Medco (who handles the pharmacy benefits), but I told him to call the State Health Plan (who handles DME). He wouldn’t do it. And, there is not another pharmacy in my town that is in-network. (My wonderful pharmacist who I have been using for years is in the process of filling out all the paperwork, so he will be in-network.) But, until then, I’m stuck dealing with incompetence.

So, I have a call in to a lady at the State Health Plan to try and get her to explain to the pharmacist how to put the strips in his computer, so they will go through and I can get them. Until then, I’m running dangerously low on strips and may have to purchase even more with my own money.

Tears are streaming down my face now, hot tears of anger and frustration.

I feel so helpless. What else can I do? No one seems to want to listen to me when I explain to them why it's so important that I get these strips. I've written letters, the ADA has written a letter, but it's all falling on deaf ears.

Sometimes I look at people and wonder why they don’t fight for what they need. Why do they just roll over and play dead? But, now I know.

They’re tired, just plain tired.

My dance

I remember it like it was yesterday.

I felt a funny feeling in my rather large belly. Not really a pain, but more of a tightness. It was 6 AM. I lay in bed for an hour. The tightening was starting to get a little more painful and was now coming at 5 minute intervals.

Finally, at 7, I got up and told my mom. I pointed to my stomach and said, "I think it's time."

My dad was in the shower. My mom went and told him it was time to go to the hospital, but he didn't believe her. He went through his normal routine.

His face turned pale when he came out and saw me sitting on the edge of the bed holding my belly and panting.

I got up and got dressed. I put on make up and curled my hair. (I know, what was I thinking?)

Then, it was off for the hour drive to the hospital. I felt every little bump in the road. Every time I moaned a little my dad would speed up.

Finally, we arrived at the hospital around 9 AM and I was settled into the room.

It was a long day. Someone was in the room with me all the time. But, there was one time when everyone had gone somewhere and I was all alone.

And, I panicked. The enormity of what was about to happen hit me like a ton of bricks. I didn't think I was ready for this, not the labor itself (although I wasn't ready for that either), but I wasn't ready to be a mom. I was scared to death.

Finally, at around 7:30 that night I started pushing. And I pushed. And I pushed. And I pushed. I screamed some and I pushed some more. Then, I screamed some more. One of the nurses grabbed my face and squeezed.. hard. She told me to stop screaming and to breath. I was confused, didn't you have to breath to scream?

Finally, the Dr. came in. He kept telling me to push.

"Come on Penny, one more push."

"Come on Penny, one more push."

"Come on, just one more."

Are you starting to see a pattern here? I stopped believing him. I remember at one point I said , "I can't do this." He assured me that I could. He was right.

At 8:42 PM the pushing stopped.

He was here. He was perfect. He was mine.

I had wondered if I really had a purpose. People treated me like I didn't. After all, I was just another pregnant teen. But, the moment they laid him in my arms, I knew why I was here.

I was made to be his mom.

I took him home and I loved him with love that I never knew existed, pure, unconditional love.

Nothing else mattered to me, but him. He was my life. He was my heart. He was my inspiration.

I've loved him for 16 years now. I've tried to be a good mom. I've tried to lead by example. I've tried to be his teacher. But, I think he's been mine.

We've been through a lot, just the two of us. Many times when I wanted to give up, I'd look into his little face and find my motivation to go on, my motivation to be a better person.

I can't imagine my life without him. I don't know where I'd be had I not had him. But, I do know this, I wouldn't be happy. I couldn't be. A part of me would be missing.

If someone had told me when I was younger that I would get pregnant when I was 16 and that the father would leave me to raise the baby all by myself, I would have told them they were crazy.

I would have done whatever it took to stay on the path I had chosen. I was going to college. I was going to be a nurse. A baby was not in the plans and I wouldn't give up my dreams.

But, I didn't know. I thought his "sperm donor" and I would get married. I thought we'd be one big happy family with the white picket fence.

I'm so glad I didn't know. I would have changed it and I wouldn't have one of the best things that has ever happened to me.

He's my baby and I love him more than life itself. I've always told him he's my dance.

"Now I'm glad I didn't know,
The way it all would end,
The way it all would go,
My life is better left to chance,
I could have missed the pain,
But, I'd of had to miss.....the dance."

Happy birthday Holden! I love you!

Perfect Post Awards

Thank you Julia for awarding me with a Perfect Post Award for Because I Have To.

I'm truly honored.